Needing advice to make an informed choice

[Guest guest]

Howdy Folks,

here in Lynchburg, VA. Well we had our Pediatric Endo visit up

at University of Virginia. I can't say that I'm completely yee haw

about it, but the good news is that the doc is famiiar with the

Magic Foundation and will defer to my preferences on how to care for

Connor. For example, he wanted to know why Connor wasn't G-tubed?

I told him that we gave him a night time bottle. He then came back

with " What about his teeth? " I countered with, " I'm sacraficing

infant teeth (which they lose anyway and can be covered) for the

avoidance of an invasive surgery that can lead to other eating

problems down the road. For RSS, Connor is an " eater. " If we can

avoid the g-tube we will. For some of you other families that

wasn't an option. I know this, but I had to educate the doc. Then

he wanted to start Connor on the Growth Hormone. However, Connor is

having his 2 year old, nutritional growth spurt right now. Now, if

I remember Dr. H. right, giving Connor growth hormone right now

won't really augment what's going on naturally in his system. So, I

asked the Dr. if we could wait until Connor's height percentile

plateaued. He countered with, " Well, no one has PUBLISHED a study

on Growth Hormone and nutrition together... " GRRRRRR. Once again,

that academic snobbery that keeps popping up. I've seen Dr. H's

results at convention, but other professionals are not ready to

follow her protocols. However, many of you know how PERSISTENT I

can be, so for now, we are doing what I feel is best for Connor,

even though it's not " normal proceedure for UVA, " but is what I

learned at convention and with my visit with Dr. H. I guess the

other thing that is frustrating is that this doctor doesn't even

want to know what we are doing nutritionally for Connor. His

comment to me was, " I just do endocrinology. " Well, Connor has

-Silver syndrome and endocrinology is just one of the systems

we have to deal with.

Sheesh! I know this sounds rather unlady like, but there are days

when I want to find a blow up doll of a M.D. I then want to

practice my kick boxing on said M.D. I have a good imagination.

Pow! That's for the Orthopedic who won't do anything for Connor's

back. Boom! That's for the first pediatrician who got mad at me

for putting Connor in Early Intervention without asking his

permission first. Kapow! That's for the geneticist who told us

Connor was normal to our faces, but then told his nurse he thought

he was going to be retarded (which we overheard in the hallway!).

Smash! That's for the O.B. who completely missed Connor's IUGR and

then asked me if I started smoking during my pregnancy. Can you all

understand why I'm having anti-Doc sentiment here?

Deep Cleansing breath (whoosh).

So, my question to you all are about teeth and needles. Are we

making to great of a sacrafice for Connor's teeth with this night

time bottle?

And, since we will be starting Growth Hormone in about three months,

which drug and which injetable do you all recommend. I've heard

good things about Nutropin and " Injectease sp? " Comments please.

This doc will defer to my preferences and I found out already which

drugs my insurance will cover.

Oh, that leads to another hiccup in Connor's care. The cost of meds

in our insurance program are tripling next year. Yes, you read that

right. TRIPLING! Multiply that by four because there are other

family members on regular medication. So, we are having an insurance

crisis. Due to this, we started the process of applying for

Medicaid and services for Connor. We've only been waiting a year

now to be seen by the intake Social Worker. I know for a fact that

three other RSS kids in the state of VA are getting Medicaid for

their syndrome. My case worker and I can't even get our phone calls

returned.

I think I need to go do that kick boxing thing again.

Mom to Graham 7 ADD; Cameron 4; Connor 2 IUGR, RSS, Assymetry,

Kyphosis, Periactin, Zantac, Prevacid.